Kimberly,
Thank you for writing and giving advice. This forum is a great place to exchange ideas and to support one-another. I do appreciate your comments. To answer your question, I am driving to see Dr. Fukushima. I live in Birmingham, Alabama, but am in Nazareth, Pa to attend my father's funeral and see family. I will then drive from here to have a face-to-face appointment with Dr. Fukushima. His office said he doesn't consult remotely so I'm making the pilgrimage there. His approach seems unique and the results published on his website seem impressive. I wonder why more physicians don't use the same approach. Did he use a keyhole incision on the patients you know?
I will try to contact Dr. Calhoun Cunningham to see if we can talk about treatment. It's always good to get second opinions and new perspectives. Depending on where a doctor is trained, his technique will vary, as will his results.
In Alabama, there are a couple of good neurosurgeons whom I know personally and trust but I have to say I'm intrigued by Dr. Fukushima's unique style and wonder if I can be one of the lucky ones who can retain hearing for his hearing patients. Many physicians, including my ex-husband who no longer does brain surgery, have advised treatment by Gamma Knife or CyberKnife but warn there's a better than 50% hearing loss afterward.. It's a tough decision to make. I honestly don't know what's best. It seems to me that the sooner I mess with the tumor, the sooner I'll invite problems into my life. Right now leaving it alone to grow incrementally and hopefully only give me mild symptoms seems to be the way to go. Having said that, my life has already begun to change. Once a social butterfly, I stay home in the quiet more. Once a reporter who loved the excitement of being on the scene of a story, writing and articulating what's happening, I find brain fog/memory loss prevents me from being an effective communicator. I tire more easily and headaches/tinnitus drag me down more. I'm at an age where docs will still operate but they warn not to wait too much longer or I'd risk complications. Also, my tumor size is at a point where they advise taking action. There doesn't seem to be a clear path forward. My wonderful ENT articulated it well when he said, "Pick one of three options. There is no cure and all options have consequences."
I find it disturbing that so many patients' tumors grow back. That alone makes me want to wait to have it removed. Also, the side effects of surgery sound similar to the side effects of keeping the monster in our heads only with a lot more risk and exposure. When I told Dr. Friedman I hoped to have Gamma Knife, he warned against it saying to go ahead, and he'd be there for me afterward if needed.
I know everyone on this forum has wrestled with these same challenges, and in particular, you Kimberly. It sounds like you have continued to have a full life and that is the goal! I wish you continued good health and happiness. And thanks again for your insight.
Donna